Sunday, May 13, 2007

Day 1 - Mother's Day 2007 - I've never blogged before. I've been online for 10 years now, and this is my first blog. I feel liberated in a strange sense today.

Today was a perfect day to start it. I'm day 12 post facial cross nerve regeneration surgery, and still recuperating. I am still slightly swollen in the jaw area, slightly "shrek-colored" there too, and still in a good bit of pain from the incisions in my leg and face.

Anthony and the boys had a family function to attend, and I had the afternoon to myself, after the wonderful Mother's Day celebrating we had amongst ourselves this morning.

So, for those of you that didn't know...I had cross facial nerve surgery with a plastic surgeon, Dr. Andrew Elkwood of Shrewsbury on May 1 at Monmouth Medical Center.

I know it sounds sooooo cliche, but I first saw Dr. Elkwood's Practice on Oprah a few years back, and the piece I saw had nothing to do with the surgery I had. I wrote down the name of the place and filed it away in a manila folder I keep called "The Paula File." The Paula File is where I keep things I clip out of magazines that I hope to use, buy or have someday (like those Christian Louboutin animal print open toe stilettos....they are sooooo happening in 2007).

So let's call it Karma that "thing" that led me to him. The piece I saw had to do with a woman who had lost in excess of 300 lbs. and needed reconstructive surgery for the excess skin she had on her arms, legs and body.

Dr. Elkwood, who is truly a nice and gentle man, took some live nerves I don't need (though the pain in my leg right now is pretty intense, so let's just hope he's right about that) out of my outer left calf, and made incisions on each side of my face (face lift incisions, if you will, in front of my ears) and implanted the nerves in the right side, and "fish-hooked" them under the skin, over the left bad side and connected them. Pretty cool, no? The hope being that the nerves will regenerate correctly, and boths sides of my mouth will move more symmetrically 6 months to a year from now. In addition, in the name of symmetry, Dr. Elkwood removed the"thing" (sinkenesis...sp?) which made my left eye move involuntarily with the left side of my mouth.

I met Dr. Elkwood, and learned that even though my Bell's Palsy was almost 10 years old(as old as Matthew), I was a good candidate (based on an EMG of the face I had) for this surgery that could possibly restore some of the symmetry I lost 10 years ago, as well as restore (at least for me personally) some of the self-confidence I lost back then (which I realize no one could possibly understand since you don't have Bell's Palsy) and alleviate some of the physical discomfort I felt over the last 2 years on the side of my face where the Bell's Palsy occurred.

I weighed the options for a long time, and in February decided it was something I had to try. I had tried everything else since I got Bell's Palsy, steroids, electric shock, acupuncture, vitamins, fish oil, prayer, positive thinking...sadly, none of them worked. Even before Botox was vogue, I went to see an Oncologist in Princeton in the spring of 1998 who wanted to experimentally inject what they were still calling "botulism" into my face to the tune of $30,000. Um...un tested experimental cow bred virus injected into my face???...not so much for me back then.

With Anthony's and my parent's support, my decision was easy for me to make as it was also understood by all those that mattered, and we agreed that we would wait until after we took the boys on our first real vacation to Jamaica in April.

I let Anthony take a bunch of pictures of me in Jamaica, knowing that it would be the last time my face would look like that, and I'm glad I did that since I have less than a dozen pictures of my self and my kids over the last 10 years with my "crooked face."

I was also extremely lucky to have my surgery documented by the Discovery Channel, and will let you all know via this blog when it will air on TV, maybe by late summer.

That experience was very surreal, talking about it out loud while it was happening. My Doctor has appeared on the Discovery Channel many times, and I guess he thought my situation was interesting and not common and put them in touch with me. I was thrilled to have the opportunity to tell my story in the event that others with similar facial disfigures could know that surgery is an option for them. The Discovery Channel crew was great too. Some of you will note an extra part of my surgery if you watch the Discovery Channel but I haven't shared it with all of you, it's rather personal, and I hope to keep it that way until it airs at least! ;-)

I also hope to use this blog to advocate for Matthew and Benjamin and for Fragile X Syndrome and raise awareness on their behalf.

I will post pictures, other interesting things as they happen, but I am looking forward to having one central place for this instead of e-mailing hundreds of different people in my address book, family, friends, Fragile X Parents, SCOPE (special ed PTO) parents, Marsh friends, MK friends, RS friends, you'll all get it in ONE SPOT!

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